Since March, 9,006 Canadians have died from COVID-19, the vast majority of them people over the age of 80 with underlying comorbidities and living in long-term care homes.
The impact that COVID-19 has had on the population in long-term care is tragic. But what about the care needs of the other 20,000 Canadians who die from non-COVID-related causes each month? In Ontario alone, we see nearly 9,000 deaths per month.
Research on the preference for place of death shows that most people with a terminal illness prefer to die at home or in other home-like environments such as hospices or palliative care units, where they are comfortable and surrounded by their loved ones.
However, a significant concern for patients and their families is the lack of healthcare services and supports at home. Patients in their final months of life need around-the-clock care. Sadly, only one in five Ontarians receive end-of-life care through our publicly funded home-care program in their last year of life. The pandemic has further limited access through staffing shortages, cancellation of visits and a lack of personal protective equipment.
How can we, as a society, improve access to this essential care both now and in a post-pandemic period? Stated bluntly, what is the cost to support a good death?
Through the provincial home-care program, Ontarians have access to care provided by registered nurses, personal support workers and other healthcare professionals trained in palliative and end-of-life care. Patients can receive up to 24-hour nursing support at home in their final weeks of life. Not surprisingly, this results in better patient outcomes. Patients who receive end-of-life home-care spend fewer days in hospital in their last three months of life and are three times more likely to die at home.
A recent study of 50,000 deceased older adults in Ontario found the cost to enable people to die at home by providing end-of-life care is an additional $995 per person over the last three months of life, less than the average cost for one day in a hospital.
So, why aren’t all Ontarians at the end of life receiving home-care? Why is the bulk of end-of-life care in Ontario still provided in hospitals?
The simple answer is that there needs to be more investment in the provincial home-care program. Providing care at home requires the full-time support of family members and loved ones. The potential income loss family caregivers absorb to enable someone to die at home or in a hospice cannot be overlooked. Unpaid caregivers play a critical role in a person’s end-of-life experience. Caring for a loved one at home simultaneously may be a rewarding and challenging experience for family members.
While financial supports such as the Compassionate Care Benefits through Employment Insurance are available for family caregivers in Canada, the application process is complicated and lengthy and needs to be made more accessible. As well, considerations should be extended to non-family members in a patient’s circle of care.
While we continue to battle the spread of COVID-19 in our long-term care homes, let’s not forget the end-of-life care needs of those in their final days of life in our community. These services need to be scaled up to their pre-pandemic rates and further expanded to meet these growing needs.
With a relatively minor investment from the government, we can provide more compassionate and better care for Ontarians at the end of life.
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While I fully appreciate the context in which the article was written, there is much more to looking after people who choose to die at home. Some don’t want to stay in hospital, or a hospice. I have accepted all my patients for palliative care at home when practical, in collaboration with specialized nurses, hospital support, pharmacists, social worker, and other advocates. You cannot separate the task of terminal care and the impact on the family at home, most of whom are dedicated to looking after a loved one. However, they need support too, and the professional carers are not excluded. That was before Covid-19. Being a UK trained physician, and used to home visits, the trend was less apparent in Canada in the younger generation of family doctors when I moved to Canada in the 1990s. The amount of knowledge, experience, degree of connection, communication, empathy, and compassion is not something that can be turned on like a tap. The delivery of all has to come from within the carer, and it can be distressing too, but it is a commitment. I recall several occasions when I, as the physician of care, have been spontaneously comforted by the patient or their relatives. Those are humbling and yet most professionally fulfilling moments, creating learning opportunities to pass on to upcoming family physicians, especially residents in training. It is not so much a question of money but how we can manage with available resources. Whatever the cost, whether in hospital or at home, from child to geriatric, it is the quality of healthcare, respect, dignity given, and self-esteem of the patient that is integral to the success in delivering what we are trained to do. We have to understand that governments cannot provide for every need – that is reality. We do need to be innovative, demonstrate leadership in our communities, building trust with the authorities while remaining compassionate and focused on the task in hand.
just great. p
great article. paul
Amen…for your efforts. Keep them up
Huge amounts of government funding should be given to home care at end of life. Nobody, with great supportive nursing care, would choose to die in hospital.
A very good and timely article
TY Drs. Hsu and Isenberg. I agree 110% and yes, while that may not be possible according to some, when it comes to palliative care, it seems like we always need to do more than other areas of medicine to be noticed and taken seriously.
Community-based palliative care is what patients want and it is better for the health care system as a whole. Yet, a 2019 HQO report showed that following modest gains, access to community-based palliative care has stalled.
The only question that remains now: red pill or blue pill.
http://healthydebate.ca/opinions/patients-palliative-care
I think this is a bit patronizing.While not blast the Feds and the Province that this is a dire situation and do not beg. Demand funds. PMM
Hi again Paul,
As someone who has “blasted” government often past ten years, I can tell you this approach does not work, at least not often. I see this happening now with LTC advocates and the escalating rhetoric and ad hominem attacks on politicians.
I would steer advocates towards working with government rather than attacking them. This does not mean we stopping pointing out the gaps or criticizing plans that fall short. Rather, the advocacy must be productive rather than simply rancorous. We must provide solutions, not just criticism.
I hope you find this helpful.
Not bad. How about an article on the state of Long term care for patients at home who need daily help ? LTC at home for special needs children who may well die if nothing is forthcoming is abherrant. A blight on “universal health care”. PMM
Hi Paul,
Your argument is a #whataboutism, as in, what about LTC.
Plenty has been written, much of it critical, about LTC. That is not in debate here.
I find it refreshing to see these two women discuss answers and solutions, of which community-based palliative care is one of many.
Here are more solutions:
https://policyoptions.irpp.org/magazines/july-2020/palliative-care-has-been-lacking-for-decades-in-long-term-care/
I hope you find this helpful.